Independent Living – Breaking Barriers – The Borneo Post – 20 April, 2013

Independent Living
by Peter Tan. Posted on April 20, 2013, Saturday

INDEPENDENT Living is a movement of disabled people working towards self-respect, self-determination and the right to live in the community. It all began with Ed Roberts, who is considered the father of the Independent Living Movement.

He and his entire family contracted poliomyelitis in 1953. He was 14 then. It was two years before the vaccine for the dreaded and debilitating disease became publicly available. While his family members recovered, the disease left him paralysed from the neck down. He had to depend on an iron lung to assist him in breathing.

After his discharge from an 18-month hospitalisation, he continued schooling from home via a phone connected to the school. His mother also encouraged him to attend classes in school once a week.

When he sought assistance from the California Department of Rehabilitation in 1961, the agency refused to provide support to him because he was considered too severely disabled to be employable. The rejection was later reversed.

In 1962, Roberts was the first severely disabled student at the University of California in Berkeley. The university had initially refused to admit him because of his condition but it also relented later on.

As there was no suitable accommodation for students in his condition, he had to stay at the campus hospital. Other severely disabled students subsequently joined him at the hospital. Some of the students eventually moved out from the hospital to say in the campus apartments.

They organised themselves to provide crucial services such as wheelchair repair and attendant referral service. With the allowance they were entitled to from the government, they employed attendants to provide personal care and bought electric wheelchairs to ease their mobility.

In 1970, the students managed to secure funding from the Department of Education to run the Physically Disabled Students Program. The programme was so successful that they received requests for services by disabled people who were not students as well.

The Berkeley Centre for Independent Living (CIL) was established in 1972. Apart from providing the essential services, the CIL also advocated for the civil rights, self-determination and equal access for disabled people. There are more than 400 CILs in America today.

After earning his postgraduate degree, Roberts taught political science at a college and then returned to Berkeley to lead the CIL as its second executive director. Ironically, in 1975, he was appointed director of the California Department of Rehabilitation, the very agency that had categorised him as too severely disabled to be employable.

Roberts introduced the Independent Living Movement to Japan in 1981. This was followed by a series of tours around Japan promoting Independent Living by Judith Heumann, another American disability rights activist, and other disabled advocates.

The first CIL in Japan is the Human Care Association. It was established in the city of Hachioji in Tokyo in 1986 by Shoji Nakanishi. To date, there are about 130 CILs in Japan under the umbrella body of the Japan Council on Independent Living Centres (JIL).

Independent Living leaders from Japan conducted three workshops in Malaysia from 2005 to 2007. Selected trainees from these workshops attended further training in Japan and Thailand. Subsequently, the Society of Independent Living for the Disabled Selangor was established in 2008.

Basically, an ILC provides support required by disabled persons to live in the community instead of in institutions. This includes information provision, peer counselling, personal assistant service and independent living skills training.

Peer counselling helps a disabled person regain self-worth. This is always conducted on a one-to-one basis by another disabled person qualified in peer counselling. It is the first and most important step in the process towards Independent Living.

Independent here does not mean that the disabled person has to live and do everything by himself. Where and when help is required, a personal assistant will provide the necessary support. This includes toileting, dressing up, cooking, feeding and even support in work if the disabled person is employed.

The funds to employ personal assistants are usually provided by the federal, state or municipal governments. The number of hours of the service required is determined through consultations between the ILC and the disabled person. A severely disabled person may need 24-hour support while a moderately disabled person may only need a couple of hours.

Most severely disabled persons are totally dependent on their families in every aspect of their lives. Perhaps, the most worrying issue that is seldom voiced out is what will happen to them when their sole carers, who are usually their mothers, pass away.

The role of providing for a disabled person should not rest solely on the parents or siblings. There surely will be times when they are unable to take on this responsibility. Independent Living is crucial in liberating severely disabled persons in this aspect. They can move on with support from the ILCs and personal assistants.

The Independent Living Movement is rapidly spreading across Asia, thanks to the unrelenting effort of Shoji Nakanishi through the Disabled Peoples’ International Asia-Pacific Region and Asia-Pacific Network for Independent Living Centres. ILCs have been established in 11 countries in the past two decades.

There is still a lot of work to be done in Malaysia though. Many severely disabled persons are still unable to realise Independent Living. There is a need to promote this movement throughout the country so that disabled persons understand the ways they can achieve self-determination and live with dignity.

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A New Dawn For The Disability Movement In Malaysia

Winds of change are coming. Impatient as I have been, this is part of the entire process that cannot be hurried. I am a firm believer that there is a place and time for everything. Yet, so often, I forget. But fall in place they do, in their own time.

Disability in Malaysia has evolved from charity-based to rights-based with the enactment of the Persons with Disabilities Act 2008. At the same time, the disability movement is increasingly practicing a structured and knowledge-based engagement with the relevant stakeholders apart from persuasive and hard-nosed advocacy. These include the Independent Living Programme and Disability Equality Training that were introduced to the movement in 2005 by the Department of Social Welfare and the Japan International Cooperation Agency (JICA).

The Independent Living Programme advocates for the provision of support services to enable disabled people to live independently in the community. Disability Equality Training explains disability in a logical manner and encourages commitments to break environmental and attitudinal barriers. Both work in tandem to realise the participation of disabled people in all areas of life.

These two platforms have transformed the disability landscape in the country somewhat but more can be done towards achieving that goal. Now, we have new allies from the Pusat Rakyat Loyar Buruk who are spearheading a revolution to expedite the process of making Malaysia more accessible and inclusive. For once, I may just have the opportunity to witness substantial changes to the built environment in my lifetime.

28th Anniversary Of My Spinal Cord Injury

Every year this day, I spend some quite time reflecting. I no longer think so much about how my life could have turned out had I not made that fateful dive into the pool. I could have become an engineer like what my father wanted me to be to take after him. I could have become a politician. I could have turned to crime. I could be very dead by now. I will never know. That is not important any more. I cannot turn back the clock and change that any way.

Instead, I reflect on what I have done so far with what I have and what I can be. Life is too short to be wondering about what could have been. Searching for a purpose in life was difficult in the beginning. It took a lot of hits and misses for me to discover what I wanted to do and one that I could do well in. Blogging was the first step. Then I had the fortuity to make friends with people who nudged me in the right direction. Kuan Aw and Christine deserves all the credit for being the wind that filled my sails when I first set out from the harbour.

Dr. Kenji Kuno of the Japan International Agency (JICA) gave me every opportunity available in his collaborative projects with the Jabatan Kebajikan Masyarakat since 2005 to learn about Independent Living Programme (ILP) and Disability Equality Training (DET). My perspective on disability and rights of disabled people are shaped by the philosophies and principles propounded in these courses. I am now a senior trainer for DET and resource person on ILP because he gave me many opportunities to learn and put them into practice.

Wuan is instrumental in encouraging and supporting my work in disability advocacy. Without her, I would not be able to do so much. I may be independent but I still need assistance with my activities of daily living. Wuan helps me with that and that makes it convenient for me when I am out and about. Even at home, my life is easier because she makes sure that my needs are well looked after before she goes to work and after. She is always there for me. Indeed, she has been my pillar of strength since the beginning of our relationship.

On this anniversary, I want to celebrate these wonderful people who have come into my life and made a difference in so many ways. I am who I have become today because they have been generous with their kindness. They have proven that disabled people, given the opportunity and support, can achieve much more than we are made to believe. I am that irrefutable proof.

The road ahead may still be long but because of the foundation that they have helped me build, I am now doing work that is not only personally fulfilling but one that has the potential to change society for the better. To them, I want to say a big thank you from the bottom of my heart. My life is all the better because of you.